As I go through the journey of trying to heal my son I often wonder....."Am I doing this more for me or more for him? Will he feel like I am always trying to fix him instead of just loving him the way he is? Everyone says 'He doesn't know any different because he has always been this way'. I disagree, am I wrong to disagree?" It's funny how no matter how I approach dealing with his spina bifida I am always left with guilt one way or another. If I am doing all the doctors say, if I am ignoring some of what the doctors say, if I am following my mommy gut, if I am just loving him for who he is and not trying to heal the SB, if I am trying to heal the spina bifida or even a combination of it all. It seems I always feel like I am falling short somewhere or like I am messing him up (emotionally) in some way.
Many people have tried to comfort me over the years about him having spina bifida. One of the comments I get most often is that "He can still play wheelchair basketball". That's a great sport, that I hear many mothers rave about how much it has helped their child gain confidence. I am not dissing the sport at all BUT as a mother wouldn't you rather your son be able to run down the street and play basketball at the closest park? He wouldn't need a special chair, or a group of other kids with special chairs, he wouldn't need you to drive him an hour or so away, he could just have the freedom to go to the neighborhood park. It's hard having a child with special needs. I never truly understood the term special needs until I had a child of my own with special needs. They really do need extra care and have special considerations to take into place. We are going camping the end of June and packing for my 3 girls is so much easier than packing for my son. Isn't it supposed to be the opposite? :)
I work hard to try to find a balance for him and for I. A balance between trying everything we can to give him the best life possible (which to me means using alternative medicine when appropriate) and still letting him have a childhood. I am fortunate enough to live in an area where alternative medicine is rampant and widely accepted. This also means that I often have people coming to me telling me how this doctor or that remedy would help my son. I have no doubt that many things could help him in one degree or another but our schedule, my paycheck, his body and his patience can only handle so much. I am grateful for all the options out there but it does make me really have to pick and choose what we put into our lives and has me researching a ton. Sometimes it gets exhausting. I wonder if I am insane for thinking I can be successful in getting him out of diapers. I worry that I'm trying to hard and that it's a hopeless cause and I will look back with regrets for time lost and energy wasted. I also worry about the flip side of things. I worry I will think I didn't try hard enough, that I should have done more, that money shouldn't have been an issue, etc.
Sometimes support groups are great for these types of emotions. Other times they cause more of them. This journey though similar is still so very, very private and personal. So I challenge myself and I ask you parents of children with or without special needs, be kind. Trust that the parents whose parenting style you disagree with love their child just as much as you love your child and they are doing what they think is best for their child. Probably constantly reevaluating every choice and every move. We all have our limits financially, educationally, emotionally, physically and support wise. What one person can easily do with their resources could be an impossible feat for another with their set of resources. Even if it's something as simple (yet complex) as a certain mindset or a lack of education. We all have our blinders and are often unaware that we have them.
I love to write and I love to document my story but with each post that goes out there a little bit more of my heart and my experiences go out with it as well. That's a big thing for someone to trust you with. Cherish their experience, whether you agree or disagree with someone you are learning a little bit more about yourself each and every time. Be thankful for another view and something to either solidify your current belief or to make you question and look beyond what you are currently seeing.
The best of luck to you on your journey whatever it may be!!!
“Be kind, for everyone you meet is fighting a hard battle"
-Ian Mclaren
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